One of the sad heritages from the days of institutionalisation of people with intellectual disabilities in Ireland, and elsewhere, were the very high levels of hepatitis B infection found amongst the people living in those institutions. Irish studies by Lyons et al.(1987) and Scanlon and Kahn (1989) showed that 50 to 70 percent of the residents had become infected, and around 10 percent of them were chronic carriers of the virus and thus a source of ongoing infection to others. The exact reasons for this situation are not entirely clear but they were presumably linked to the poor quality of hygiene, nutrition, health and of the environment.
Subsequently, due to the risk of infection to staff working in these institutions and to combat the spread of the virus amongst the residents, vaccination for hepatitis B was recommended. An unpublished report by Fitzgerald in 1998 from the Eastern Regional Health Board noted that 82% of staff had been vaccinated for Hepatitis B, but only 14% of the people with intellectual disabilities. More recently, Cooney reported (2009) that 527 out of 632 clients in the Sligo/Leitrim Community Care Area had been vaccinated for hepatitis B. However, there have been no published studies of the levels of hepatitis B in Ireland since the 1980s in this population, so one cannot say what effect this policy and the generally improved conditions within the institutions have had on the incidence of hepatitis B in them.
Camphill communities of Ireland are part of the international Camphill organisation of life.sharing communities. In these communities, people of all ages and abilities, many of whom have intellectual disabilities, share their lives. Home life is based on the extended family model and everyone contributes to the different tasks of the community based on individual wishes and abilities. Research on the Camphill approach has been published by Grainne Lawlor (1998) and Aine Fahey et al. (2010).
Being enabled to make one’s contribution through work, be it in the house, garden and farm or one of the many craft workshops, is an essential feature of life in Camphill. But so too is celebrating life together! This might be spontaneous fun and games, birthday parties, or visits to the local pub, cinema or other facilities. It would also include celebrating seasonal festivals, making music together or putting on a play or attending the local church.
Healthy living is a high priority in Camphill and is reflected in all aspects of the lifestyle that is adopted. It is promoted in the design and furnishing of the houses, the organic gardening and farming, the healthy diet and the attempt to maintain a balance between work, rest and recreation. In addition, conventional medical services are supplemented through the use of complementary medicines and therapies, as appropriate.
As no Camphill communities were part of the original studies on hepatitis B in the 1980s, and as part of a risk assessment in determining the need for implementing a vaccination programme in Camphill, an investigation was undertaken to determine the prevalence of hepatitis B in the communities. The study was conducted in 2002, covered eight out of the nine Camphill communities in the Republic of Ireland, and was limited to all consenting people with intellectual disabilities (192) and the residential long-term co-workers (92). None of the employees, short-term volunteers or co-worker children were included. The study was preceded by an explanatory letter to all the participants, along with the families of those with intellectual disabilities, and a simple questionnaire asking about previous hepatitis B vaccination or infection/jaundice, blood transfusions and years spent in Camphill or other institutions. A consent form was included.
The test itself consisted of a salivary swab taken with a small sterile sponge mounted on a little handle. Administering it was completely non-traumatic; the swab could be moved around in the mouth or the person could spit onto it before returning it to its holder. All the swabs were analysed at the National Virus Laboratory in Dublin.
Surprisingly, only two people had evidence of previous infection with hepatitis B. One was a resident with an intellectual disability who had spent many years in a large institution before coming to Camphill; the other was a co-worker from South Africa. Neither was an active carrier of hepatitis B, so they posed no risk of infection to others. These results are similar to the levels found in the general population in Ireland as described by O’Connell et al. (2000).
It is not easy to confidently explain the disparity between the figures from the surveys of the 1980’s and these results from Camphill. Does one assume that the incidence of hepatitis B in institutions in Ireland has declined dramatically in the past 20 years and now mirrors those of the general population, as is the case in Camphill communities? Unfortunately, this seems highly improbable, as many of the people tested in the 1980s will still be alive; however, one would hope that with vaccination and a better standard of living the numbers affected will now be less.
In Camphill the low incidence of hepatitis B exists in spite of the fact that some life sharers have resided in the communities for over 50 years (the median was 11 years). The vaccination history of 28% of the people in the study was not known; 56.5% had not been vaccinated and only 15.5 % of the group were known to have been vaccinated. It is therefore unlikely that previous vaccination had a significant effect in contributing to the low levels of hepatitis B in the Camphill communities. However, the fact that between 50% and 60% of the people with intellectual disabilities in Camphill came from home and had not been exposed to institutional life with the risk of hepatitis B infection will certainly have contributed to the lower incidence. This, along with the high quality of life in relation to health, nutrition, hygiene and the environment in Camphill, that do not foster the spread of this sort of infection, seem the most likely reasons.
This study seems to indicate that it is possible to maintain low levels of hepatitis B amongst people with intellectual disabilities and their supporters through making healthy living a priority for all members of the community. Therefore, whilst it is clearly important to implement the hepatitis B vaccination guidelines recommended by the Royal College of Physicians, this should not be seen as the only measure required to improve the health of people with intellectual disabilities in services in Ireland.
Further studies should be done to ascertain what the prevalence of hepatitis B infection is now in the original institutions and in modern settings which more closely resemble life in the open community. Hopefully vaccination and improved living standards will have resulted in reduced numbers of residents being infected. This information would be important for policy makers, staff, the residents and their families.